It does take a village to raise a child. We adore our village. We are endlessly grateful for our village, near and far. But truth be told, where SMA is concerned, we live on a tiny little island. A deserted island, in fact. Once a year we get to go to the mainland: the FSMA conference.
In June, we attended our fourth FSMA conference in five years, in Washington, DC (actually at the National Harbor in Maryland). We stayed in another ridiculously fancy hotel.
Upon first arriving at the hotel, two days before the conference officially started, we ran into some FSMA friends and these four kids proceeded to chase each other around the fancy lobby, at FULL speed. They did circles around one of the pillars, with no care that well-dressed business people were coming and going. Wild, free, unhinged: childhood.
After the rollicking game of chase, we left the hotel to go have dinner with Nonnie, Oscar’s great-grandmother, who lives close by.
When it comes to SMA, we have always answered Oscar’s questions as he has asked them, and never provided more information than he has requested. He has heard the phrase “SMA” a thousand times around our house and certainly in doctors appointments, and he knows that we go to the FSMA conference every year. However he has never indicated, nor asked, whether he has SMA. In talking about his “condition” (for lack of a better word) he always says (as do we) that his muscles work differently than others and he is not strong enough to stand up, so he uses a wheelchair. On the car ride over to dinner that night, Oscar asked casually, “Do those girls have SMA, too?” In the privacy of the front seat, our jaws dropped open. That word, too, is what did it. It’s the first time he has verbalized having SMA. That he named himself a part of this group in this way. We never told him anyone else had SMA either, though just days prior we had been talking about how he probably knows more about his diagnosis than he lets on. We have always helped him find camaraderie with others in wheelchairs, others whose muscles also work differently. In some ways it is a relief, to know we can all talk a little more freely. To know we have permission to use the name, “SMA.”
This year the conference was all about Oscar. He is old enough now, and outgoing enough—and mature enough—that he jumped right in and met people left and right, and made lots of friends. Kids, teens, adults. People in chairs, people who walk. In previous years he has not wanted to go into the kids’ room, because they show movies there and they might be scary or inappropriate (his words). This year he kept saying, “I’ll go but I might not stay.” Oscar suggested David stay to watch the magician with him—and he did, for half an hour—then Oscar kicked David out! And Oscar couldn’t wait to go back the next day! He even watched parts of the Hot Wheels Movie, Shrek, and Little Rascals! And played Super Mario Brothers! All this in addition to doing a bunch of cool crafts, and hanging out with some new friends!
It’s hard to believe we had only met Stevie Hopkins (Director of Awesome from the 3E Love wheelchair heart company) once before—at the FSMA conference in Minneapolis, two years ago. We have kept up with him online though, and it was a thrill to see him again! A girl at the conference saw Stevie and Oscar talking and asked if Stevie was Oscar’s uncle. I think Stevie and Oscar were both equally honored by the suggestion, and we now call him “Uncle Stevie.”
We saw many familiar faces
and met many new folks
As usual, Ghi Ghee came along to the conference.
In addition, this year, THREE of Oscar’s physical therapists came, too! His school therapist, Barb Flender
And his aqua therapists, Kat DiNicola & Karen Terp.
They all attended the day of continuing medical education conference that FSMA now offers, and also all came to some of the social events and/or part of the family conference as well. The conference seems to have made a lasting impression on each of them, and they all used the phrase, “next time” in one way or another, indicating they are each planning to attend again sometime. We are overwhelmed with gratitude for their presence. It means the world to us, knowing they, too, have visited our mainland.
This year, one of the sessions we attended was on breathing basics for type II. This is a session that happens every year, and we had not attended it since our first FSMA conference, four years ago. Then, we were terrified. The name “cough assist” sent shivers up our spines, and that was the most tame name of a respiratory support device in the session. Now, using a cough assist is as second-nature as brushing teeth. We were reassured as we sat through the session that we are doing all the right things.
Every year, for the last few years, the volunteers host a dance party. This year, part way through the evening, they played the limbo, and held up a feather boa as the pole to duck under.
They moved the boa to all different heights to accommodate everyone from kids in power chairs, to adults on their feet, to type I kids of all ages in reclined wheelchairs, to babies in strollers. The joyous energy was infectious, and I started to tear up as I watched these volunteers embrace every single person in the room as completely “normal.” There was just pure love and acceptance. Everyone was equal. David and Oscar went through the line a few times, having a blast. I honestly just stood there, overwhelmed with the beauty of the moment.
This conference is a gift. Despite the most amazing village we hail from, no one in that village can know first-hand what it is like to raise a child with SMA. We are alone in this way, in the day-to-day. But on the mainland, we can talk freely about sleep and our collective lack thereof, and laugh about it together. We can toss around acronyms like TLSO and biPAP and not have to explain ourselves—and we can trade tips about using each—along with a myriad of other equipment. We can commiserate about accessibility issues and celebrate the successes of our kids being fully included. We can watch with unleashed joy as our kids chase each other full-throttle through the hotel. We can be natives of the mainland for three full days each year. These three days allow us the room we need to breathe for the rest of the year. The reminder that we are actually not alone.